BetterLife FSHD

A health and research platform providing tools to better understand and manage your FSHD.

Join BetterLife FSHD Today!

What is BetterLife FSHD?

BetterLife FSHD is a health and research platform created to help people living with Facioscapulohumeral Muscular Dystrophy (FSHD). BetterLife gives you tools to track your symptoms and resources to better understand and manage your FSHD. The information you put in BetterLife is used for FSHD research. When you join BetterLife you can:

  • Track your Health: Keep an eye on your symptoms and monitor changes over time.
  • Get Helpful Resources: Find information made just for people with FSHD about the symptoms you are experiencing.
  • Find FSHD Research: Learn about and see if you qualify for research studies investigating FSHD.
  • Share Data Safely: Your health information helps researchers while staying private.

By joining, you’re helping to speed up research and bring potential new treatments closer to reality.

Learn More

Who Can Join?

Anyone in the United States or its territories with FSHD who is at least one year old can join. If you are not an adult*, a parent or guardian needs to sign up and create your profile.

*18 or older in most states, 19 or older in Nebraska and Alabama, and 21 or older in Puerto Rico

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Why It Matters

As FSHD research advances, and potential therapies are developed, it is more important than ever for people living with FSHD to be involved in research, their own care, and advocacy.

When you join BetterLife FSHD, your data and experiences become part of a powerful story. Together, our story will help researchers develop future treatments, help doctors better understand FSHD, and help ensure affordable access to future treatments.

You’re not just managing your FSHD: you’re powering the path forward to a better future for everyone affected.

How it works

  1. Read and sign the online consent form.
  2. Create an account by filing out your information.
  3. Add a profile for each person with FSHD, such as yourself and/or your child(ren).
  4. Complete surveys and track your symptoms.
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User Experience

“

This is a growing community that provides support and collects data to help us move forward. It’s exciting to be a part of it. It gives hope.

”
— Aron Merrill, BetterLife FSHD User

FAQs

What data does BetterLife collect?

BetterLife collects personal information, such as your name and contact information, as well as health information. Your health information is collected through surveys and other activities within BetterLife, such as connecting your electronic health records or uploading a copy of your genetic testing results.

Is my BetterLife FSHD data secure?

Yes, BetterLife FSHD is hosted on a secure data platform that complies with important research and privacy regulations for protecting participant data in research. However, there is a small risk that the data you share in BetterLife FSHD will be seen or accessed by someone who is not authorized. The FSHD Society is deeply committed to protecting your data and has taken all the necessary steps to reduce this risk.

What is an informed consent form? Why do I need to sign one to join?

An informed consent form explains what is involved in a research study, including its goals and the benefits and risks to you. It ensures you fully understand and voluntarily agree to take part in research. BetterLife FSHD is a research project, and all people eligible to join will be asked to review and voluntarily sign the informed consent form to take part.

If you are signing up a child for BetterLife and they are old enough to understand, you should talk to them about joining and make sure they are comfortable participating.

View our informed consent form.

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